Entries in Lupus Style
(19)

"What is success? I think it is a mixture of having a flair for the thing that you are doing; knowing that it is not enough, that you have got to have hard work and a certain sense of purpose." Margaret Thatcher

I want to get back to writing and sharing on this blog and WEGO Health's "Health Activist Writer's Month Challenge" (#HAWMC) seemed like a great opportunity to kick start me back into the swing of things. Being honest and revealing is not easy when the truth is filled with chronic pain, fatigue and a finding the flair while avoiding a flare, what I call "Lupus Style.

Realizing it has been a long time since my last blog, 2013's Lupus Awareness Month had just begun and I had recently participated in my first Flash Mob for Lupus Awareness in Hollywood, organized by Mat Simpkins of RunningforLupus.com aka @runningforlupus. I don't plan on sharing a complete update now.

No fooling, the prompt for today said "Wordless Wednesday" and suggested posting a selfie to demonstrate my excitement about participating in WEGO Health's 2015 #HAMWC!

Health Activist Writer's Month Challenge prompt for today. Day 13 Write a health acrostic for your condition, hashtag, or username! (acrostic = a poem where every letter of a word serves as the first letter of a word or phrase i.e. DOG = Digs Others’ Gardens)

From the magic and movement with Richy Jackson and The Haus dancers to working out and sweating with Richard Simmons, I have committed to reaching beyond my comfort zone this month. Reaching beyond the preconceived limits of what I thought is possible. Before I reach beyond, let me share where I find comfort and relief from the stress and tension of living with lupus. My comfort zone tends to be located wherever my cat is. (At the time, my fur baby is cuddled in a ball by my feet.) I don't think of or see myself as a "cat lady", in fact I grew up as a "dog person" but now when I think of my comfort zone and favorite method of relaxing there is no place I'd rather be than cozying up to and with my tuxedo cat, Rex.

Today's writing prompt for the WEGO Health "Health Activist Writer's Month Challenge" was to share as a parent what do I hope I'm doing right. Well, I am not a parent. Thanks to lupus, I am unable to conceive my own children. Again, thanks to lupus when my husband and I went to explore adoption, we learned that birth moms usually want the adoptive moms to be healthy and wealthy, the ones we met didn't want to give their babies to someone who lives with a chronic illness. Thankfully, the West Los Angeles Animal Shelter isn't so stringent in screening prospective "rescue" families. I am a "cat mom" and I hope that I'm doing it right. Aside from the obvious needs of fresh food and water, I hope that Rex knows how much I love him.

When I am suffering and in pain, Rex will cuddle beside me. When I get up and dance to Lady Gaga's powerful music, Rex will watch me dance. During this month of facing challenges head on, Rex offers his support with his soft purrs. I am lucky to have Rex in my life. He offers his unique form of "cat therapy" by looking up at you with his big eyes and vocalizations. When I need some TLC, my Tender Loving Cat is there. Rex is an amazing "Cat-a-tonic" and he soothes me and ease the pain and tension of being someone who lives with lupus.

I know that circumstances prevent some people from having pets, but if you can. I would suggest that you adopt/rescue a pet from your local animal shelter. Rex is one of the best assets I have in fighting off the helpless, hopeless feeling that can envelope me as a 45 year old woman who will never have anyone call out "Mommy" - I swear sometimes the sound of Rex's meow sounds like he is calling out out "Mom" I know how that must seem... so may be I am a "cat lady" after all.

“If I could do anything as a Health Activist…” and had no constraints or limitations. Here is where I toss out the "prompt" Why waste time or energy imagining what my life can't be? When I can use the same time to create "vision boards" or meditate towards what my goals are and what I can do and be. This life of mine may not be perfect but it is my "Lupus Style Experince" and I am thriving despite living with a chronic condition for over 30 years.

I would love to create and lead “Lupus Style Experience” workshops and travel around the country (make that world!) from big cities to small towns to share the “Lupus Experience” with people who normally would not be able to have access to the educational or wellness resources that a “Lupus Experience” would cover everything a lupus patients needs to know. The workshop would start with a conversation about coping with the diagnosis and stages of illness (flare to remission to a flare to remission again) to living with lupus. Stress management will be discussed as the group each receive a foot massage and pedicure. Depending on the location of the “Lupus Experience” different exercise classes could be offered Yoga, Tai Chi and Low Impact Aerobics or Movement classes (aka No Pole Dancing), because those with Lupus Style like to strut their stuff. The purpose and goal of the “Lupus Style Experience” would be to assist the lupus patients discover the beauty within them and their own ability to help manage this condition called lupus. The “Lupus Style Experience” is more than a support group it will be start as a half-day workshop that concludes with nutrition awareness / cooking class and a shopping trip to the market. The patients go home with more than information and painted toes, they each receive healthy groceries to make the recipes at home. When I have the time and find the "angel investor" these prgorams could change the world one lupus patient at a time. (Have you heard of The Butterfly Effect?)

Thinking about my goals as a Health Activist, if I could do anything it would be to share what I know to be true to as many people as possible. That truth is “lupus awareness is fun but lupus is not.” If there were no limitations, I would attend more Alliance for Lupus Research “Walk with Us to Cure Lupus” events and I would have a “Lupus Awareness is Fun!” team in every city. I would participate and hope to speak at health conferences. I would be able to speak and share my story of transforming from patient to patient/advocate to whoever would listen. I want to continue to engage and connect within the lupus patient community. Whether speaking to a member of Congress on Capitol Hill or tweeting a new “lupie” online, I feel blessed and appreciate the gifts of lupus.

At some point my goals for my Health Activism became my reality. I am doing what I can as best as I can. To that end I am challenging the actual constraints and limitations to live with “Lupus Style”. I am proud to share that I have been invited and will be participating at the 2013 TEDMED 2013 ‘Great Challenges Day” on April 19th in Washington, DC. I am thinking big and living with flair, who knows what tomorrow will bring but I look forward to it.

It’s April--time for another Health Activist Writer’s Month Challenge, also known as #HAWMC on Twitter for WEGO Health. The challenge is to write 30 posts in 30 days. So let’s get it started--why do I write about my life with lupus?

I write about lupus (my primary presenting disease is Systemic Lupus Erythematosus) but I also have Antiphospholipid Syndrome, Fibromyalgia and Rheumatoid Arthritis. Emma Lazarus either said or wrote “I am never going to write for the sake of writing.” I suppose I agree with her. Unless prompted by a challenge to discuss why I write and share (some would say overshare!) my health online, I find that my “microblogs” on Twitter and status updates on Facebook are enough. But, as I have learned by participating in last year’s WEGO Health’s Health Activist Writer’s Month, getting it out there and putting it out helped me move forward as a patient/advocate and activist.

It was for a post last April-- the prompt had something to do with “writing style”-- before I knew it I had created a reflection of how I deal with my disease. I wrote about “Lupus Style” in a way that was originally intended to mirror the “look of the day” that many fashion bloggers post. Of course as a Lupus patient my looks included my fuzzy socks and comfy purple robe! Now it is with pride that I share “Lupus Style” whenever I can.

Emma Lazarus’ writing inspires me and it is fitting that I am using her words to help inspire mine as I begin the 2013 HAWMC. She is more famous for the quote “Give me your tired, your poor, your huddled masses yearning to breathe free.” (the poem that can be found at the base of the Statue of Liberty). While she wasn’t talking about the challenges that the Health Care system faces and that TEDMED is addressing, I find that her words lift my spirit. “Lupus Style” is about finding the flair and avoiding a flare. Here’s to another 30 posts for WEGO Health who knows what I will discover and share with you. #HAWMC Day 1: done.